Brown’s Baby Blues November 30, 2006Posted by scartissuemark in The Missing Building Blocks - A Life in my Lungs.
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‘For those who have heard the news of British MP Gordon Brown and his wife having a child diagnosed with Cystic Fibrosis and have subsequently done a search and come across my blog, i have the below statement for you’…
My Mum was very interested in the news tonight and told me of the diagnosis. Obviously little Fraser is gonna have trouble with his illness much like all of us do, but i’d like to share some insight that hopefully will inform everyone that CF is not all doom and gloom.
1. If Fraser attends the Great Ormond Street Hospital as i did, he’ll be treated by some lovely poeple, meet and interact with other sufferers, play games, and have fun in there.
2. There are many CF people who do not present with some or all of the known symtoms, such as having to take Enzymes with meals, or even frequent chest infections. This can lead to a great state of health throughout childhood and adulthood as some only attend hospitals once or twice a year and lead “normal” lives.
3. NOW is probably the best time to be born with CF. In 21 years, when Fraser is my age, he will have available two decades of new research and medications and treatments. I had and elder brother who died before i was born with CF, he died at age 8. Because of new treatments, funds and awareness, i, like many other have liveda much longer life than those before us.
And future generations will live much longer than i will, which isn’t great news for me, but hey, ‘the children are our future’…
I’m back in spirit, my body may not come back though. October 13, 2006Posted by scartissuemark in The Missing Building Blocks - A Life in my Lungs.
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After three weeks of feeling terrible in hospital, i am finally home, now merely feeling bad…
This was my worst admission ever. At first my problems were a chest infection from my usual bug (pseudomonas) and my Oxygen saturations in my blood were low and even lower at night which is what was causing my headaches. I have had to be placed on an oxygen supply, this happens 24/7 now. This is because my lungs are too scarred or weak or full of phlegm to breath in and supply my heart and brain with O2, this causes struggling of my organs especially my heart.
I had always associated going on Oxygen with pre-death, everyone i know/knew who was on Oxygen has died. After oxygen treatment there is the ‘Bipap’ breathing machine’, transplantation and that’s it, no further treatments are available.
As the admission progressed i felt better, then began getting high temperatures, the chills, and the the sweats, i then started feeling unwell again and am only a little better now that i’m home. I have to go back up to the hospital on Monday and may have to go back in or change my IV antibiotics to do here at home. One thing i’m concerned about is that this is as well as i can get now, that i’ve dropped a step in my health, cannot go back and just have to get used to it.
I went a little stir crazy in there after the second week, i had my music, my DVD’s and my psp with me, as well as some books i’ve been meaning to read and yet i couldn’t concentrate on anything, it feels better being at home but i think i’m a little depressed, I don’t get any enjoyment from anything around the house that i used to, except my comfy bed.